Deteriorating from My Disease: One Young Woman’s Painful Life with Tarlov Cysts

Stacey lives with Tarlov Cysts, of which the incidence rate is unknown.

When doctors found three cysts growing on my spinal nerve roots, by my sacrum, they said not to worry as there was nothing they could do for them.  So, I thought nothing of them; yet, I was having very sharp sciatic pain that traveled down my legs.  Four neurosurgeons later, Dr. Kabins in las Vegas, NV stated my tailbone was severely shattered and I needed to have surgery.  I was scheduled for September 2008.  I spent five and one-half hours debating on whether or not this surgery would help, thinking I was going to be fine.

My pain and walking abilities became worse, so I decided to look back at my MRI from 2007.  I noticed it read Tarlov cysts, so I googled the term and found descriptions of similar symptoms I too was suffering from.  I requested another MRI and received my report two days later, which showed my cysts had grown from 15 mm to 20 mm (about 1 inch in size).

Since that time, I have learned these cysts erode your nerves and bone, and there are only three neurosurgeons in the United States that will do surgery to slow the progression of this disease. I had to file for SSI (Social Security Income) due to obvious reasons.

I feel like a prisoner in my own body.  I awake each morning with muscle weakness, shortness of breath and pain. At what seems like forever ago, I was a very outgoing person; now, I can only handle sitting for about five minutes, and I have intermittent periods of having to either stand or lay down. And where I used to be able to jump and run, I walk with a cane or arm crutches.

I recently learned from the Dr. Frank Feigenbaum from Dallas, TX, I would need two surgeries as my pelvic area is full of them. However, he is concerned about the Tarlov cysts around my sacrum bone as they have started to erode the bone away along with the nerves in my spine. The surgery will require four to five hours, a hospital stay of at least four days, and an extra eight days in Dallas as well as 18 months to heal due to the slow the progression of this disease.

I can no longer work, as I am just deteriorating.  So, in the meantime, I am eagerly waiting to get approved for SSDI and continue to have Hope.

Thanks for listening.

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Global Genes Comments

  1. Shana,
    I can totally relate I go between using a cane to using a chair due to pain. I have been this way for 20 years (a chiropractor broke my neck ). The last MRI I had revealed the cysts but the doctor didn’t feel the need to tell me even though I am suffering 90% of the symptoms. I only learned about them yesterday at the pain clinic when I showed her the swollen mass just above my tailbone.

  2. Shana,
    I personally wanted to thank you. I was also diagnosed with tarlov cysts just recently and has been causing my life to be a living hell. While not as severe as what you have explained, I do have ALOT of the issues you have explained here in your story. I just wanted to thank you and let you know you are not the only one having to fight with this.

  3. I have been told I have Dural ecstacia and have also been told I have tarlov cyst. I have the exact same symptoms as Tara L. I am also a Marfan’s Syndrome patient. What do I have??

  4. I am 18 years old and recently got into a car accident. After a month of going to the chiroprator i was feeling better so i went back to work. I began feeling sharp pains in my back and major weakness in my legs today I have been diagnosed with tarlov cysts on my sacrum. I have no idea what to expect and I’m worried. Prayers and advice on what to expect are greatly appreciated.

    • Lynda Rex says:

      I 1st want to say I’m sorry this happened to you. Please stop seeing the chiropractor I think this is aggravting the cyst and could be causing more pain & symptoms. Look over the internet & all the prior
      posts. I recommend you to try not to worry but to see your options & go for the best option for you. I also want to tell you what you can expect. Everything depends on where you live I feel. Larger cities have more options for Dr.’s. I have found out that the best thing to do when finding a Dr. is to do your research. Also your Insurance is a big factor. Please don’t feel like you are alone. Prayers are always with you, all effected and the Doctors.
      Start a log for all your questions for the Doctors. Keep a log all of your symptoms for the Doctors.
      Good luck! Feel free to contact me through this site for support.

      • Apologies, my comment should have been directed at Tara not Linda. Can you please describe your bladder symptoms? I was diagnosed with a tarlov cyst on the s2 nerve root measuring 7mm. I have been having pain after urination and pain after ejaculation for 3 months and I have been misdiagnosed numerous times. I also have bowel dysfunction in the sense that I have narrow and small stools from time to time. The only thing that correlates with my symptoms is the cyst and it’s location. All else on Mri is normal The prostate gland is normal. The urinary bladder is normal. The rectum is normal. Periprostatic soft tissues
        are normal. The neurovascular bundles are normal. The sacral plexus is normal. The sacrum is normal. Normal
        subcentimeter Tarlov cysts are noted involving the sacral roots. The L5-S1 and L4-5 discs are normal.
        The abdominal muscles are normal. No evidence of a rectus abdominus injury. Pubic symphysis is normal. Thanks.

  5. I’ve just been told I have a 1.5 cm by 1.8 cm Tarlov Cyst in my Sacral spine at the S 2-3 region. I’ve been having symptoms for the past 5 to 6 years (pain in the ‘tailbone’ area, sciatica down my left leg, pressure in both legs, pins and needles feeling in both feet, bladder and bowel issues, headaches, ringing in my ears and lower back pain. My Pain Management- Spine doctor doesn’t seem to attribute any of my symptoms to this cyst; although I have foraminal narrowing and two bulging discs at L 3-4 and L 4-5 with disc degeneration. I’m in constant pain… very depressing.

    • Lynda Rex says:

      I would recommend getting a second opinion. I have learned that older Dr.’s are not always keeping up with the latest, greatest techniques. Also do you research on the internet for Doctor’s. If you live in a big city you have better options. Depending on your insurance, you can make an appointment directly or get a referane from your primary care Doctor to the Doctor of your choice. You do not need to advise you spine/pain Dr. I would take a copy of your MRI. I would also consider the Dr.’s that speciality is in cysts. You can go Directly to one of these Dr.’s. If you are talking certain medicines for pain they can cause depression. Please be mindful of these medicines. Also I have tips on headaches get a mouth guard. The best ones are from your Dentist if you can afford them if not your drug store wshould have some. I went to my Dentist who advised that when you bite down hard due to pain this can cause headachs that I had. Ice is your best friend for pain. Put ice packs on your back, also on your feet or anywhere you have pain. I hope this helps and I feel that the larger the cysts get the more pain you feel. I hope these tips help and please don’t feel alone as there are quite a few people who have cysts. Take care and best of luck!

    • Hi Lynda, can you please describe your bladder symptoms? I was diagnosed with a tarlov cyst on the s2 nerve root measuring 7mm. I have been having pain after urination and pain after ejaculation for 3 months and I have been misdiagnosed numerous times. The only thing that correlates with my symptoms is the cyst and it’s location. Thanks.

  6. Jean Hammock says:

    Hello, I just had my MRI 3/8/16 and it showed not a whole lot had changed, still disc degenerative disease, bulging disc L-4, L-5. Also L-5 -S-1. Mild loss of disc height from L3, – L4 through L5- S1 ( WENT FROM 5’5″ to 5’4″ ) then my doctor told me that I have arthritis in my lower vertebrae’s. But she never mentioned this ( small right S2 Tarlov cyst is noted ) what does that mean? Who should I speak to? I looked up symptoms and that could explain at least half of my symptoms! My last MRI before this one was 5/2009

    • Lynda Rex says:

      You said your cyst is small. The biggest problem with these cysts is when they block or compress the nerve. You have more than just the cyst to consider. I would talk over your problems with you family practice Dr. and your family. I think
      you need to determine with them what is the worst problem & google Tarlov Cysts. Tell the Family Dr. what you saw on line maybe your Dr. will also research this & decide the best option. Your doctors know your age, medical history best. You must advocate for your best interests
      if you think the Dr. doesn’t listen to you. Dr. F Feingbaum is in Dallas and that is where I live so my choice was easy. He also has good explanations of what these cysts do
      & other question can be covered on line. Don’t feel alone feel alone. We all feel your pain. Take care and best of luck!

  7. Who are the three surgeons who perform this surgery on Tarlov cysts? Are there truly only three of them currently? Is t true the only procedure is to clip/remove the cyst , pack the area with body filler e.g. Muscle/fat, and fuse the affected vertebra? What if they catch it sooner?

  8. Hi. I have Perinural cysts and its paining while Sitting, sleeping and walking making my life miserable. Plz give me opinion to get relieved from this

    • Lynda Rex says:

      Ice packs on your lower back, & where ever you have pain. When doing anything take breaks about every 10 minutes. Get wedge shaped pillow to sit on. Think about see Dr. Feingenbaum in Dallas. Good Luck!

  9. I’m in Dallas and have pain from Tarlov cysts and have thought about seeing this Dr also. My back Dr seems to think it may not help but its worth a try, right? I fell and severed my quad tendon and after numerous surgeries and being in leg casts, I developed this also. As if one problem with walking wasnt enough.

  10. Doreen Harris says:

    Does anyone have pain when you sit?? Even on a soft couch, when I sit I get a sharp pain.

    • Doreen,
      I think we all have pain when sitting/standing/walking etc… Once you have this long enough you will know how the nerves travel down your legs & back up again. They have a triangle shaped pillow type
      seat that you can get to help with pain while sitting. My best suggestion for pain is ice packs.
      Good luck and remember you are not alone in this.

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